Questions About Legs, Feet, etc.
AnonymousJuly 19, 2007 at 8:00 am
I know many of you suffer so gallantly with far worse after-effects from GBS than my wife does. I visit you on this site daily and in my inept way search for a way in which I could be more helpful to you. Perhaps there is no more to do but offer the long distance gift of my caring, however helpful that might be.
As the caregiver of my wife, who was stricken with GBS on the 2nd of July, 2006, I know altogether how frustrating and dark times can be with this illness. Others wish to be caring, but are too caught up in their own feelings. I mean the group who from the beginning tell the sick person that he or she “looks so good!” and then later tells the person “How much better you look!” and “Feel better, huh?” Meanwile, the person (if walking) is tottering and often feeling extreme pain. Yes, just try to tell the “better and better” crowd anything.
I know that I am just venting, but sometimes things boil over. Perhaps I should get to my question.
My wife has made significant progress from GBS. A year ago at this time she was paralyzed in all four limbs and had serious problems with mental acuity. She is now walking unassisted on a daily basis well over a mile and takes very little if any pain medication. She still has pain, but is very cautious of the side-effects of all the medications we know of for GBS–yes, even neurontin, at least in the quantity necessary for any real help from it. The pain and tingling continues, at times worse than in her earlier stages of illness. All doctors seem unhelpful and know little, if anything, about GBS. Therapists can help with movement exercises, but can do nothing to help relieve the pain. Movement of the ankles continues to be a problem, so also the toes.
Where do we go from here? No one here in Georgia (50 miles west of Atlanta) seems very helpful. I asked a therapist the other day if there were any exercise videos or DVDs available for people in my wife’s condition. The therapist said that she didn’t know if any. Do any of you know of any, and if so, where does one get them?
My deepest gratitude for any help you can give us, even the gift of caring.
Blessings to all of you
AnonymousJuly 19, 2007 at 9:08 am
Good morning Don.
My GBS affected my legs and feet. My left foot is back to normal but my right still is numb (40%) but I have been walking since mt 3rd month of PT. I will say 95% of therpist have never come in contact with people with GBS. I was the 1st for my therpist. He was well aware of GBS so over 2 months he and I worked together. Since then he has had another with GBS. I have been into recovery for 7 months and still feel numbness in my right foot. Your wife is doing great remember GBS STANDS FOR GETTING BETTER SLOWLEY
(Steve)Fran read my reply to Shelly (Steve)I forgot to mention but the neves in our feet seem to be the last to recover.
AnonymousJuly 19, 2007 at 9:19 am
[COLOR=”Blue”]”All doctors seem unhelpful and know little, if anything, about GBS”[/COLOR] Dr. Shin J. Oh at UAB is a leader in the field of GBS and CIDP. . You will need a referral from your neurologist that includes all your wife’s test results to get an appointment
There is no “magic” treatment, but he may be able to help you find the most effective way to manage the recovery stage. I think Birmingham is about three hours from Atlanta
AnonymousJuly 19, 2007 at 10:34 am
It sounds as though your wife is really doing quite well at the one year mark. If she has pain is it nerve pain, muscle pain, or joint pain? Because if most of it is in her feet, most likely it is nerve pain & neurontin (gabepentin) or Lyrica will help a lot with that. Even at small doses the effect is extremely helpful & the side effects are really mininal. She still has another year or two of recovery ahead of her, but I would try to make it pain free if it is possible.
AnonymousJuly 19, 2007 at 2:03 pm
I think your wife is lucky to have an understanding, caring husband like you. If she is walking a mile, she is doing great – in my opinion. I had my GBS a few months after your wife. If I walked that far, my toes and feet would swell more.
Funny how my left foot is much better than the right. I too have 40% of my right foot numb. I have a problem with the ankles being stiff. But it sure beats crawling! I think I am walking on my heels due to the numbness of the toes. I have little puffy swellings at the base of the three middle toes on the top of my foot and my toes are holding water/edema. I am thinking positive – that time will take care of it. I am scouring my wholistic books to see what supplement I can take to fix this. When I find out, I’ll let everyone know.
AnonymousJuly 19, 2007 at 2:08 pm
Hi Don, Fran is lucky to have such a caring man to be looking after her, your love for her really shines through.:) Has Fran tried aqua therapy? it works well for gbs/cidp patients, it helped me with my pain so well that I was able to decrease my neurontin dose. Until recently, I was improving everyweek. I have a really rough time with meds and the side effects and allergies etc, with neurontin I haven’t had side effects more then just a few days after starting a higher dosage-and it was only a little lightheadedness. My dose use to be 600mg am, 600mg pm, and 900mg at bedtime. now I’m at 300mg am, and 600mg at bedtime. on occasion I have to add an afternoon dose, if I over do things abit. It sounds like your wife is doing well in her recovery. Keep up the positive attitudes. Take care.
AnonymousJuly 19, 2007 at 11:25 pm
How frustrating the pain is when we sometimes just want to do something, like peel potatos and garden, and its just too painful! I was always told just to keep doing excercises, push through it ………… :confused:. I dont even really know what to say to that when a doctor tells me that, because if i could, believe me i would. I think when school starts again in September and the kids are back at school, I may go back to doing water excercise as I have read everywhere that it is supposed to be helpful. Besides that, I continue to take my Cymbalta 60mg twice a day – which helps for the overall pain. Its the pain in the hands and feet that is the worst for me, however I did try Lyrica for just over a week, but had absolutely awful side effects. Funny thing is that it broke the constant pain cycle, which I hadnt even realized was there until it was gone 😮 . I hate that I take medication as I have always shied away from all meds before this, however I do feel that the ones I take definitely help my quality of life, for which I am grateful, especially being able to keep up better with the kids.
You and Fran keep up the good work!
AnonymousJuly 21, 2007 at 7:57 am
My wife and I are very grateful for the help and kindness you have given us. She is making progress; however, she is under a lot of stress right now as she is trying to make arrangements for next year at the university where she teaches. I don’t think she is well enough to cope with the stress of returning there. Both she and I are convinced that the hostility she daily experienced from her department head likely lead to GBS. Even the thought facing that hostility will cause the residuals to get out of hand. A difficult time!
Thanks, Jim, for the name of the doctor at UAB who may be of medical help to her. Thanks also to information others of you have given about medicines that may be of help. Thanks to all of you for caring.
AnonymousJuly 21, 2007 at 8:46 am
I am 15 months past april of o6. I still have very weak legs and ankles and I walk most every morning to keep in practice. I live in north ga. near ellijay and hve been seeing a Dr. in Rome. I agree, there is not much help in the medical field that seems to help. neurotin, or Lyrica and and see me in about 3 months! I hate to waste the time and the trip anymore. I have had to learn the hard way not to exert myself or I will pay for it for at least a week of setbacks. I try to strech my legs and stay as limber as possible, but no pushing exercises as I once did. Its really hard for me not to do the things I have always done when I wanted to do them. Now, there is just no fuel in the tank! It takes a whole different mental attitude to live with this condition and I am still trying to accept it and adjust to it. A friend of mine said I had been promoted to supvisor now and I would have to accept my new position. My wife is my caregiver and has leg problems also, so its difficult for her also. I am past the working age and do not have to worry about a job, but your wife may not be able to handle the stress of a job as she recovers from this. Fatigue is a serious problem for me and I have to shut down for a couple of hours every day. Even reading takes energy.
GBS is supposed to be rare, but I have found its more common then the stats seem to indicate.
The pain in my feet and legs is bad at times, and then I will have a couple of days when I think I have turned the corner and WHAM! I hope this helps your wife as she knows others are fighting the same battle. My e-mail is [email]firstname.lastname@example.org[/email] if you want to contact me directly.
AnonymousJuly 22, 2007 at 6:33 pm
The only bad thing about GBS is everything takes time. I was diagnosed in 2004 and had a really bad case and was also paralyzed from the neck down. The thing with the nerves growing back gets aggravating at times. It’s a slow healing process and nerves take awhile to grow back. Normally the feet/ankle region is the last thing to recover as far as pain/nerve wise. My feet still hurt, but they have got better. They don’t hurt near as much as they used to. It takes a lot of time with GBS and yes, it is frustrating with the little knowledge the doctors and therapists have. For my ankle exercises to regain strength my therapist had me sit on a bedside and place my foot on this board type thing that had a ball on the bottom of it so it could move around. I would do one foot at a time and make the board go in a circular motion using my ankle and my feet. Also, they gave me this stretchy therapy band that (with shoes on) I would place it on the bottom of my foot and hold the ends of it in my hands and push with my foot, one at a time. Also, walking an incline with someone behind me helped because that strengthened my ankles. She will need someone behind her though, b/c when I was doing that my ankles weren’t strong enough and I would either end up doing it on my tip toes (which doesn’t help you ankles) or I would start falling backwards. One more exercise was to stand about a foot away from a wall and lean onto it with your hands. stand as far away as she needs to, to feel the stretch in her ankles. Also before bed you could place your hand on the bottom of her foot and push up, and then put you hand on the top of her foot and push down, then move her ankle around…but with shoes on!!! Always with shoes for support. I hope this helps some. this is what my therapist did for me and my ankles are fine now. almost to 100%. the only problem i have is going down the stairs in the house barefoot because my ankles don’t want to bend that far. i have to take one step at a time, but with the right shoes on and proper support i can walk down them normal. i will keep ya’ll in my prayers and good luck with everything. hope this helps!!!
AnonymousJuly 23, 2007 at 8:09 am
Good on you for trying to find out as much info as you can for helping your wife. It’s been 15 mths now since I got my bout of GBS which left me paralysed head to toe. While the rest of my body has fully recovered, my residual damage is my ankles and numbness/tingling in my feet/toes which over time is subsiding but it is a slow process. There really isn’t any info out there in the way of exercise videos as I’ve enquired about that myself. I’ve been fortunate enough that my Consultants and P.T’s have had previous experience with GBS patients therefore they have been very helpful in my recovery. I was told by my Consultants that pain with GBS is a real issue on how best to deal with it as some patients have it and others don’t and the degree varies from each individual and for them trying to get the meds right was always an ongoing process for them (I had really bad pain while I was in ICU but fortunately I don’t now). My P.T’s advised me that exercising and strengthening would help in the long term with pain. Some exercises to help your wifes ankles and feet which I was given by my P.T is wobble board (really good one as it specifically targets your ankles and feet and makes you use all the muscles which apparently there are heaps of in your feet alone), sit in a chair and put a tea towel on the floor just in reach of your toes and use your toes to pull the tea towel towards you under your feet (really good one to get those toes working), sit in chair and practice sitting up and down using the correct leg muscles and posture (we tend to just do what we can and compensate when we can’t do it properly so it gets you building up the right muscles again), walking, rebounder with the bar so you can support upper body and then you can jump, hop, stand on one leg etc. I got my P.T to write a letter and went to the gym and the personal trainer there has worked with me over the last few months at targeting all the trouble areas and it has truly done wonders for my ankles and feet. I’m walking better all the time now and people have really noticed the difference. Hope these suggestions help and keep smiling, with determination and hard work your wife will achieve results.
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